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Hometown, state: Sarasota, Fla.
Age: 61
Family (spouse/partner; child, grandchildren): My husband Dr. Gordon Swenson, and one grown son.
Hobbies/Interests: Photography, graphic design, creating beauty, e-mailing and celebrating love!
Favorite quote: “The future belongs to those who believe in the beauty of their dreams.” — Eleanor Roosevelt (I lived by this quote, always went for whatever dreams I had, and achieved them all.)
Date of ALS diagnosis: August 2008 (after consulting doctor after doctor, and eventually going to MDA)
Tell us about your life before ALS: I was always described as “vivacious” with a quick wit and a very social, outgoing nature. I loved to laugh, sing, dance and have long conversations on every possible subject. I spent my entire life in the communications field in advertising, marketing and public relations. While the publisher and editor of Panache, a glossy magazine for women that I created with my best friend Judy, I also had my own television show, “Woman to Woman.” Words were my life! I prided myself on being strong, independent and very, very competent, running a complex business and serving on many non-profit boards. I was healthy and adventurous, traveling to exotic tropical islands every chance I could!
Tell us about your life with ALS: The first thing I lost was the ability to speak clearly and to be understood when I spoke. Talking on the phone was impossible. Since at that time I was my husband’s office manager, I had to stop working for him, which greatly impacted his practice and our finances. I lost the ability to laugh without choking, and I can’t cry because then I can’t breathe. So much of my life was involved with being a good communicator that I felt like I lost “me” and the fun-loving, high-spirited woman that I’d always been. Then I lost the ability to eat or drink anything. Slowly I began withdrawing because it is just too sad for me to be unable to participate in conversations and meals. Now I prefer to be solitary, which is very hard on all those I love, but I have come to appreciate the peace that comes with being alone.
Do you have a “life motto” or profound words to live by? “You will find, as you look back upon your life, that the moments you really lived are the moments when you have done things in a spirit of love.” — Henry Drummond (I always liked this quote, but after my diagnosis, it became the words that I truly live by.)
Has there been an “aha!” moment or a specific turn of events that has helped you live with ALS? With every day that passes, and every new body function that I lose, since now even walking and driving are becoming difficult, I am reminded to never take anything, or anyone, for granted. As the result of ALS I’m now much more reflective on the meaning of my life, and I try never to miss an opportunity to express gratitude and appreciation for every act of kindness given to me. Fortunately, I am surrounded by wonderful friends, family and organizations (especially the MDA and Tidwell Hospice) who have done so much to help me deal with all aspects of this debilitating disease. With all this love and support, I have learned to accept whatever happens calmly and with a sense of peace.
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: I think that when you learn you have a fatal and incurable disease it gives you a new perspective on what’s truly important. For me, it meant reconnecting with everyone I had ever loved, to continually express my gratitude for the great times we share together through the years. ALS took away my voice, my ability to eat, and soon it will even take my life, but it’s given me time to make amends, to reflect back on the past, to know that I am a very lucky woman with great friends and wonderful family, and a lifetime of adventure and laughter. Mostly it’s shown me how I want to be remembered, that that’s as a loving appreciative woman truly grateful for all the gifts of her life.
Is there anything else about you and/or ALS that you want to share with people who read your story? We go along, year after year, and take so many things for granted because they come so easily — the ability to speak and express yourself, to be understood when you talk, to laugh and make a snappy comeback, to enjoy a meal and have a conversation, to walk and drive, to travel to a tropical paradise. But it can all be taken away without warning, and what you are left with is, “Who am I, at the very core of my being?” Fortunately I lived my life so fully, loved so many people, accomplished so much, that even now I feel truly blessed.
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